If you were diagnosed with a terminal disease, would you want the doctor to tell you how long you are expected to live? Most people think they either do or don’t want to know their life expectancy. Interestingly, data suggests that when we really explore people’s feelings, the preference is not just “yes” or “no.” It’s conditional. For that reason, it’s best for doctors and patients to discuss this preference in terms of “under this condition, I do want to know” and “under that condition, I don’t want to know.”

What is Prognostic Disclosure?

What we are discussing here is called prognostic disclosure. A prognosis is a forecast of the outcome of a disease. In terminal disease, a prognosis simply means how long the doctor thinks you have to live. If a doctor gives a patient a prognosis, it doesn’t mean the doctor is giving up or expects you to give up. It is simply a professional prediction based on what other people have experienced. When a doctor reveals the life expectancy to a patient with a terminal disease, this is prognostic disclosure.

Does Prognostic Disclosure Cause Emotional Harm to Patients?

No. In fact, earlier prognostic conversations correlate with, and in some cases cause, important benefits. Research shows that earlier prognostic disclosure does not lead to more depressive symptoms. These conversations also do not harm the doctor/patient relationship.^1,2 In fact, earlier prognostic disclosure and hospice conversations result in higher quality of life ratings. These higher quality of life ratings appear to stem largely from more meaningful and timely use of hospice.  A well timed prognostic disclosure also correlates with improved emotional status of family after a patient passes.²

Will Doctors Tell Me My Life Expectancy?

Nevertheless, many doctors do not want to discuss prognosis with patients without permission. People with terminal diseases should not assume doctors will discuss prognosis at the right time. For instance, in one survey, less than half of oncologists reported usually having conversations about life expectancy with patients.³ Discussions about life expectancy and terminal disease can also be confusing. A doctor may think the topic has been covered while a patient may be thinking something entirely different. A report published in the Journal of the American Medical Association finds that most cancer patients misunderstand their own prognoses.⁴ A separate report published in the Journal of the American Geriatrics Society finds that when doctors report telling patients that their condition could be life limiting, the patients report they have not been told this 46% of the time.⁵

Patients with Terminal Diseases Need to Be Their Own Advocates

The best approach is for patients to be their own advocates. Understanding your own prognosis empowers you to plan your life and participate in your own healthcare planning more meaningfully. However, prognostic disclosure preferences are very personal decisions, and a patient’s preferences should be honored. The best approach is for each person receiving care for a terminal disease to think through whether he or she would like to be informed about prognosis. Perhaps get the help of a friend or healthcare provider in developing that opinion. Develop a list of questions to which you always want to know the answer. Communicate those questions with your doctor. Ask them repeatedly to make sure you are hearing what the doctor is trying to say. More importantly, tell your doctor a little while later “My understanding is this . . .” Head nodding is not enough. Only two-way communication about medical conditions ensures understanding.  

Recognize that Your Preferences May Change

The majority of patients want to know their prognosis.¹ Among those who decide against prognostic disclosure, it’s important to understand that this preference may change. For instance, in one survey, patients who perceived their life expectancy as being one year or less were 66% more likely to prefer prognostic disclosure compared to patients who perceived their life expectancy to be 5 years or more.⁵ Similarly, prognostic disclosure preferences seem to change with age. When expressing prognostic disclosure preferences to a doctor, it’s a good idea to think about it in terms of scenarios rather than as a “yes” or “no” question. For instance, a patient might say, “I want to know my prognosis when my life expectancy is two years or less.” A patient might also say “For people with my condition, I want to know the 5-year survival rate with and without this procedure.” A patient should also periodically reconsider his or her prognostic disclosure preferences, and periodically confirm those preferences with the doctor.   

References:

1. Enzinger, Andrea C., et al. Outcomes of prognostic disclosure: Associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. Journal of Clinical Oncology. 2015; 33 (32): 3809-3816.
2. Wright A, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008; 300 (14): 1665-73.
3. Daugherty C, Hubocky F. What are terminally ill cancer patients told about their expected deaths? A study of cancer physicians’ self-reports of prognosis disclosure. J Clin Oncol. 2008; 26: 5988-5993.
4. Gramling R, Fiscella K, Xing G, Hoerger M, Duberstein P, Plumb S, Mohile S, Fenton JJ, Tancredi DJ, Kravitz RL, Epstein RM. Determinants of patient-oncologist prognostic discordance in advanced cancer. JAMA Oncology. 2016 Nov 1;2(11):1421-6.
5. Fried T, Bradley E, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. Journal of the American Geriatric Society. 2003; 51 (10): 1398-1403.